True colors shining through...

I've come to strongly dislike certain colors of the spectrum. 

Actually, the only color currently on my shitlist is RED.

Red is the color of the blood my body is lacking, which brings with it fatigue, shortness of breath, paleness, headaches, and all around weakness.

Red is the color of the liquid in the baggy attached to the IV pole when I get my iron infusions, which brings with it nausea, bloating, and a general feeling of malaise.

Red is the color of the folder I'm handed when I walk into the cancer center to receive my infusion, which brings with it a ticket to the room of recliners filled with other shallow faced patients receiving infusions of chemo, iron, or whatever other poisons are supposed to help. 

Red equals anger, pain, and depression.

I hate the color red.

In 5 years time...

It's been about five years, give or take, since my diagnosis. Overall things have been ok. I've been somewhat healthy in those years, not counting any common variety cold or flu bug that may have crossed my path.

In general, things were good.

Were.

Five years ago I was told that most people usually survive five years before requiring a transplant. I figured I had a head start since most people usually don't receive their diagnosis until they are symptomatic. I thought I had more time.

I fear that may not be the case anymore.

At the end of December of 2015, I developed a very bad case of anemia. I've had to have 5 blood transfusions since that hospitalization. Yes, each transfusion brought with it between a 3 day to 2 week hospital stay, multiple probes, tests, and indignities.

Every week I find myself at the cancer center along side cancer patients receiving chemotherapy, as I myself recover IV iron infusions, with the small hope that it will curb my lack of blood.

So where is my blood you may wonder? It's being systematically destroyed by my body faster than I can produce it. My spleen and liver are hoarding red blood cells which never make it to the iron to create what it needs to in order for a body to function.

In short, my organs are slowly failing.

I'm forty years old now. I don't know how much more fight I have left in me.

But it's back on the test, wait, test again carousel for now.

I hope in 5 years time things will finally stabilize, and I can finally breathe.

Under pressure...

I've been finding myself humming the opening riff of what folks my age would automatically recognize as "Ice Ice Baby."

However, I not doing so as a plea to "stop, collaborate and listen." I'm doing so because what it am is "Under Pressure."

I'm under pressure at work.

I'm under pressure at home.

I'm under pressure at my doctor's office.

It seems all I do is work all the time, and yet there's never any money to show for it. It gets sucked up by my doctors, medicines, procedures and tests. It disappears immediately. 

I worry about money constantly.

I worry about my health constantly.

I worry about my family.

And on those rare days I feel worry-free? Someone will ALWAYS show up and drop a new worry in my lap.

I'm the one everyone comes to when they are in trouble. I'm expected to solve their problems. I'm supposed to know all the answers. I'm the strong one they say.

I'm not strong. I'm tired. I'm angry. I'm frustrated. I'm stressed. I'm not fucking strong. 

I just want to sit in a dark room and cry angry, frustrated tears.

I want to run outside and scream.

I want out of this situation.

I just want out.

Why won't they let me out?

My doctor told me I've developed an ulcer. The response I got from my support system? What do you have to be stressed about?

What do *I* have to be stressed about?

This is my last dance.

This is myself, under pressure.

Keep me hanging on...

It's been a while since I updated this blog. 

I can only beat a dead horse for so long before the horse no longer resembles what it once was. 

I'm sick.

It sucks.

Repeat.

I'm still breathing, still asymptotic, so I suppose that's good. It just doesn't make for good writing material. 

During my time away from notating my slow progression towards the light, I've had a chance be an observer. When I go to my doctors, or to the hospital, I watch my fellow patients. I imagine what their lives are like. By their dress, or manner of being, I try to guess what others may see when they see these folk out and about the mundy world.

Do they just see a drunk? 

Do they see a crabby old bastard?

Do they see a punk kid with no respect?

What if they saw them all here, in the waiting room at the Organ Transplant Center? 

I see people from all walks, all battling a disease that yes, can be self inflicted, or can be genetic. I see the looks in their eyes. I can see those who have given up. I can see those that still have the fight in them. I can see what may become of me, as though watching through a foggy glass.

Because of my being asymptotic, this disease is nothing but a spectre, ominous, but as solid as wisps of smoke to me. I'm disconnected.

I'm not naive, I know how this disease kills. It's drawn out. It kills your organs one at a time. It's painful. You drown from the inside out. I've seen people I love go down this road. 

I recently lost a friend to this disease.

He was one of those few who finally gave up, and let the disease take him. He gave up the fight during a bout a deep depression. 

But still I feel the disconnect.

My test results show no progress towards that destination. 

And that keeps me hanging on.

Distractions in its many forms...

I've never been one to lack hobbies. 

When I was younger I collected baseball cards, non sports movie cards, stickers, and all manner of cheap candy store counter fare.

As I got older I switched to comics and toys.

I draw, I paint, I play video games, I used to play tennis and I've taken up running.

I always figured my hobbies were my way of handling my addictive personality. Addiction runs in my family from the silly (arts & crafts, sports, memorabilia) to the scary (drugs, alcohol, eating disorders). I suppose I'm lucky that all in my immediate family tended to find their addictions in the silly. My extended family was not so lucky.

I'm the first to actually recognize and admit our "familial habits" as addictions, though. 

Since the age of 15, I've looked at my hobbies as an addiction, and I've accepted it as a force stronger than myself. But I figured that as long as it wasn't hurting anyone, myself included, it would be okay. 

I continue collecting, drawing, playing, and running to this day. I meet all my obligations, I pay my bills, I go to work, I spend time with family, so I figure its still okay.

But is it really?

I've been asking myself this with greater frequency lately. 

Are my "hobbies" addictions or are they distractions? Do they fill a hole in my life, or do they just direct me to distraction? Is it the same thing?

I've found myself obsessed with various distractions... All to avoid my pending medical issue.

Isn't that what addictions do? Allow you to avoid pending issues in your life? Something to take the pain away? Or is it just a distraction that you could control if you really tried?

I don't know.

All I do know is I'm going through life right now in a state of active denial about my final fate. It's an "active" denial since I'm purposely distracting myself to forget it. Maybe if it was a passive denial it would be better. I'd be able to believe it and it wouldn't haunt me during the quiet moments.

I'm done rambling incoherently. I have no point to this blog. I'm just doing this to distract myself anyway.

The road is long...

Sometimes I feel I'm drowning in quicksand.

I fuss.

I fight.

I struggle.

I can't breathe.

I can't find solid ground.

I slip.

Those are the worst of days. The days where everything is beyond overwhelming, and the noise in my head is so loud, the simple functions of life are the hardest thing. Those days I want to quit.

I want to fly my white flag and scream to the heavens, "You win! I'm done!"

Then there are days where everything is perfect. Those are days where I feel human and alive. I have energy, confidence and hope.

Those are days I want to fly the Jolly Rogers and given the heavens the one finger salute.

Technically speaking, given my exemplary test results, both blood wise and very expensively radiological wise, I should be sporting a parrot on my shoulder at all times. But I still fret. 

It's not physical, though my condition is quite firmly a physical one. It's all mental.

They always say getting there is half the fun, but I feel like this is my own private Ho Chi Minh trail. The journey sucks and the destination sucks more.

It's hard to find the good and the fun on the way to death... But my only other choice is to be miserable, and I don't think I can pull off a convincible French accent.

The road is long, 

we carry on,

Try to have fun in the meantime...

And the hits keep on coming...

Over time, I'm come into a form of acceptance with my condition.

I know the things to eat or not eat; drink or not drink; do or not do, that will allow me to maintain the status quo.

It's now become a second nature.

I'm used to being sick.

What I'm not used to is watching a loved one go through a similar experience.

A couple of weeks ago, I came home from the time waster that is my job to find my spouse with double vision and an extreme case of vertigo. We were both concerned that we decided a trip to the emergency room was in order.

I'm glad we did.

Results showed a stroke.

A stroke.

My constant in this never ending battle with my disease, the person I love most of all, who would face the hordes of hell by my side during my neediness, my rock... had a stroke.

"Overwhelming" is an under-exaggeration.

It felt like someone dumped a bucket of ice right on my head. Within minutes I knew my worldview had changed again. I knew the time for my self indulgent introspection was over for now. Now, I had to be the strong one, the rock, the constant...

So, I stood up, squared my shoulders, and took it.

Things have settled since that first shot across my bow. We're both lucky that there are no lingering after effects. There is no weakness, no loss of motor function, no proof that a stroke ever happened. If not for the telltale "spot" on the CT and MRI, I could almost imagine that it was all just a very bad, and unfunny dream.

I've come out this experience felling stronger, yet more vulnerable than ever before.

My spouse came out of this experience a little scared, a little in shock, a little angry, and a little confused... much like how I did, when I first heard my diagnosis.

In the end, I think he came out of it with much more understanding. He now knows how I feel. He says he gets it now, and every time he has to tell someone new.

I really wish he didn't.

It's not that I don't welcome the understanding... I just wish he didn't have to learn first hand.

I wish it had been me.